Author(s): Wolff JL, Dy SM, Frick KD, Kasper JD
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Abstract BACKGROUND: Family and friends are thought to be the predominant providers of end-of-life care, although nationally representative data on this topic have been lacking. METHODS: This study draws from the 1999 National Long-Term Care Survey and its Informal Caregivers Survey to characterize primary informal caregivers' experiences providing end-of-life care to chronically disabled community-dwelling older adults. Study participants were 1149 primary informal caregivers, stratified by care recipients' survival or death during the following 12 months. RESULTS: An estimated 11.2\% of the chronically disabled community-dwelling older adults died within 1 year of being interviewed. Among persons who died, 72.3\% were receiving help from an informal caregiver at the time of the interview. End-of-life primary informal caregivers helped an average of 43 hours per week, 84.4\% provided daily assistance, and caregiver support services were infrequently used (ie, respite care and support groups were used by less than 5\% of caregivers). While end-of-life caregivers reported significant emotional (28.9\%), physical (18.4\%), and financial (14.0\%) strains, more than two thirds endorsed personal rewards related to their helping role. Compared with primary informal caregivers of persons who survived the following 12 months, end-of-life caregivers provided significantly higher levels of assistance and reported more challenges and strains, but they were no less likely to endorse rewards related to their helping role. CONCLUSIONS: End-of-life caregivers provide frequent and intense assistance with few supportive services. These data underscore the relevance of families to end-of-life care, and the potential benefit of better integrating families in patient care.
This article was published in Arch Intern Med
and referenced in Journal of Palliative Care & Medicine